Back pain - endo related?

[DancingPanda]

I’m new to knowing I have endo so sorry if this is a silly question. Has anyone experienced very severe back pain in the lower back and coccyx? I feel like I’ve fallen and really banged it as well as my usual lower back pain which is more intense. I’m struggling to stand and walk without hunching over, I can’t sit comfortably and I can’t lie down comfortably either. It started yesterday, and I thought it might be how I was sitting, however today I felt cramps as if my period was about to start and (sorry tmi) a lot of pressure when going to the toilet. My period has just finished so I’m a little confused. I’m going for a laparoscopy on 11th January so if anyone has had something similar as a result of endo it would be helpful to know so I can tell my surgeon. Thanks.

[Lindle]

Do you get any pain radiating down your leg(s) from it?

[DancingPanda in reply to Lindle]

I wouldn’t necessarily say pain down my legs in general, but yesterday I did find it really painful to bear more weight on my left leg specifically. I have an endometrioma on that side too and my stomach has now swollen up today.

[Lindle in reply to DancingPanda]

Endometriomas are almost always associated with deep endo behind the uterus (rectovaginal endo) with the left side most predominantly affected and involving the left ovary. Do you have any bowel issues or pain with/after sex if appropriate?

[DancingPanda in reply to Lindle]

Thank you, that’s good to know! Yes I have cyclical bowel issues but no pain with sex. I’ve made my surgeon aware of my bowel issues so she will check my bowel to diagnose but said she would not be able to operate as I’d need another surgeon there. Should I tell her about this back pain as well to make sure she checks behind my uterus? She said she was checking my pelvis, namely my reproductive organs as I suffer from infertility, so I don’t want anything to be missed.

[Lindle in reply to DancingPanda]

Does she have a special interest in endo as the NICE guideline requires that only such a gynaecologist must do laps or suspected endo?

[DancingPanda in reply to Lindle]

I’m in Scotland and would fall under Edinburgh BGSE which I know can be an issue to be referred to. She is general gynae, couldn’t see online that she had a special interest in endo however she gets all cases of endo in my area so hoping that means she does.

[Periodsufferer]

Hi Dancing Panda,

I couldn't help but comment as relate 100% to this, I have severe back pain upto 2 weeks after my period, I got a MRI and endo showed behind my womb and below bowel, also I am from Edinburgh too and have been referred recently to the endo team at the Royal Infirmary

Did you get the op? X

[DancingPanda in reply to Periodsufferer]

Hey! Yes I got the op (not in Edin) I had it at the beginning of February as my January date was cancelled but it was just by a general gynae and was fertility related as well. Endo was found behind my uterus and I haven’t got it in writing (yet) but I’m pretty sure she said post surgery that she also detached my bowel which would explain some issues I had. I’ve had some back pain on my left side since surgery but I guess that’s to be expected as that’s the side I had the cyst removed and most of the treatment. My surgeon told me my endo was mild but she didn’t stage me.

Where I live there’s no option for tertiary care - our referrals aren’t accepted - so I will never get to see a specialist even if I have rectovaginal endo. I’m hopeful the treatment I have had will somewhat help with the pain! Are you going for surgery yourself? I hope you get the help you need!

[Periodsufferer in reply to DancingPanda]

Aww that's good, glad you got the op okay. Have you had a period since and if so how was the pain compared to before if you dont mind me asking ?

I'm awaiting my first lap, really scared as I'm 28 and only in the past year I have been diagnosed, makes me worry to the extent I may have it

That's ashame they can't refer you to the endo team at Royal Infirmary but glad you got treatment and hopefully it helps, I can't wait to get my op x

[DancingPanda in reply to Periodsufferer]

Sorry I just saw this reply. I’ve had 2 periods since the op. My first was a few days post op and was okay pain wise, the second came 3 weeks later (a week early for me) and it was a struggle but I’ve heard it takes a few months for things to settle and to notice any benefit. What I will say is a lot of my pain was constant pelvis pain where my endometrioma was and since removal that’s been minimal throughout the month, as has my back pain. The general period pains were comparable with pre op but again, I imagine this will improve as the months go on.

It’s so difficult not to worry, but if it helps I’m

29 and only just diagnosed. I’ve had endo symptoms since I can remember as a teenager, I just didn’t know they weren’t normal, and as far as my surgeon could tell there is no severe damage to any of my organs. I do suffer from infertility and I’m currently going on to do IVF, but my tubes are open and ovaries are in tact (I was told to prepare to lose an ovary as worst case scenario pre op), so I was expecting a really bad outcome but actually the damage so far seems to be minimal.

I guess what I’m trying to say is, as rubbish as it is finding out at our age you have endo, it doesn’t necessarily mean there will be extensive damage. I really hope you get your op soon and get some good news as well. All the best! x

[Meworange in reply to DancingPanda]

Hi just read ur message so just confuse why they told u cabt get pregnant naturally when ur tubes and ovaries are fine?? Why lose ur ovaries,?

[DancingPanda in reply to Meworange]

Hi! I have tried for 2 years to fall pregnant naturally and it hasn’t happened so that’s why we’re going down the IVF route - its unexplained infertility. I still have my ovaries and tubes. I had an endometrioma removed from my left ovary and was told before surgery that if the damage was too significant, I may have to lose the ovary but that was a last resort. Thankfully she managed to remove the cyst, leaving my ovary in place.

[Meworange in reply to DancingPanda]

Aww tat is wonderful to heR gald u got it sorted and yes I been the same I have stage 4 and gave been trying not happening fir 2 years and now am just waiting on endo surgery from a endo center

[Bluesea7]

I had lower back, due to pressure of the endometriosis pressing .

[DancingPanda in reply to Bluesea7]

I think that was the same for me, I suspect the endo behind my uterus might have been the cause